Toms River (67 page)

In September, when he presented his draft report to a panel of
outside experts for a confidential review, its members asked the obvious question: Why only girls? There was no good answer; not even a good guess. Several epidemiologists on the review panel had been deeply involved in the investigation at Woburn, which had also found an association between childhood leukemia and prenatal exposure to contaminated water. But in Woburn, the association was stronger with boys. The most likely explanation was that gender was irrelevant, and that the preponderance of male victims in Woburn and females in Toms River was coincidental. For that reason, some of the reviewers urged Fagliano to lump boys and girls together when he presented his data. But he resisted; if the sexes were combined, the picture would get more confusing. For both sexes together, the odds ratio for children who were highly exposed prenatally to Parkway water after 1981 was 2.57 but the result was very uncertain, with a confidence interval ranging from 0.72 to 9.10. For children under age five, the odds ratio was 1.80 and the confidence interval was 0.39 to 8.37. In both instances, the odds ratio suggested that the association was not due to chance, but since the lower bounds of both confidence intervals dipped below 1.00, neither met the generally accepted definition of statistical significance.

Statistical problems had already doomed Fagliano’s efforts to try to find out whether drinking water from the riverside Holly Street wells in the 1960s raised cancer risk. Now Fagliano could make the Parkway data go away, too, if he took the panel’s advice and lumped the sexes together. If he did, the State of New Jersey and the Agency for Toxic Substances and Disease Registry could close out their joint investigation by declaring they had found nothing significant; after almost six years and well over $10 million—nothing. Yet there
was
a pattern of elevated odds ratios in Parkway data, even if most of the confidence intervals dipped below 1.00. Back in 1995, when they saw a similar pattern in Michael Berry’s incidence study, Fagliano and Berry had concluded that the results were too uncertain to warrant a follow-up investigation. Now, six tumultuous years later, Fagliano did not want to make the same mistake—especially because he had now identified a similar pattern in
two
environmental exposures: Ciba air emissions and Parkway water. He had found a series of associations
between pollution and leukemia, and he was going to report them even if he could not explain why they were so much stronger in girls than boys.

Fagliano would not do the same for other kinds of childhood cancer, however, even though the results for brain tumors and other central nervous systems cancers were also tantalizing. For children diagnosed with those cancers before age twenty, the odds ratio for prenatal exposure to high levels of Parkway water was 4.51. But that odds ratio was based on just three high-exposed cases, and its wide confidence interval dipped as low as 0.39. The story was similar for exposure to Ciba air emissions, except that this time the odds ratios were highest for exposures in the womb and the first four years of life: 9.00 for high-exposed young children with brain or nervous system cancer. Again, though, there were few children in the highest-exposed group: only four cases—almost enough to achieve statistical significance, but not quite.
¹⁰
The birth record study results, which could assess only prenatal exposures to Ciba air emissions, were even closer to statistical significance for the seven high-exposed children diagnosed with any form of cancer before age five. One more case, one more child, would have pushed it over.
¹¹

His two studies included sixty-three families in which there was a child with cancer, but Jerry Fagliano, for all his exertions since 1996, had found an answer likely to satisfy just thirteen of them—the ones that included girls with leukemia. The families were already getting unequal payouts from the settlement; now they would get unequal explanations, too. Fagliano had reached the outer limits of small-number epidemiology. He could go no further.

The families got the news in a private briefing on a Monday evening, December 17, in an austere meeting room at the county health department offices on Sunset Avenue, on the north side of town, about halfway between the chemical plant and Reich Farm. It fell to Jerry Fagliano to explain the mixed results of the studies that had taken four years to complete and cost millions of dollars. This time, not all of the families were present, but there was still a large crowd. They
were silent as Fagliano explained what he had found—and not found—in the two case-control studies.

It was hard for the families to know how to react. In a sense, they had been vindicated. The naysayers were wrong; there
was
a likely environmental cause for at least some of the cancer cases. A century-long streak of negative findings from residential cluster investigations (all but Woburn) had been broken because the Gillicks and others had refused to defer to nay-saying experts and instead insisted on a full-blown investigation. But their vindication was less than fully satisfying. The parents interpreted Fagliano’s words through the filter of their own experiences, as if his findings were Rorschach inkblots instead of statistical charts and tables. In a strictly scientific sense, the families were wrong to personalize the study conclusions because the associations Fagliano found could never explain the cause of any specific child’s cancer. He could only assess the extent to which an environmental exposure was associated with a pattern of multiple cases. Like any epidemiological study, Fagliano’s was about correlation, not causation.

Even so, it was impossible for parents not to view the study results through the prism of their own child’s ordeal. How could they not? Kim Pascarella thought of his daughter, Gabrielle, dead for ten years, when he heard Fagliano say that the association between brain and other central nervous system cancers and prenatal exposure to polluted air and water had fallen just short of statistical significance. As an infant, Gabrielle had been diagnosed with neurocutaneous melanosis, an extremely rare cancer that struck the brain and spinal cord but was classified medically as a melanoma because of the cells it affected. As a melanoma victim, she was excluded from the interview study, which included only leukemias and nervous system cancers. If Gabrielle had been included, Pascarella thought, Fagliano would probably have found a significant association with nervous system cancers, just as he had with leukemias. “My daughter’s case should have been included,” he remembered years later. “Of course, it should have been.”

Melanie and Bruce Anderson heard Fagliano talk about girls and
thought about their son, Mike. He was twenty now, having survived three brutal years of treatment for leukemia in the early 1990s. “I was annoyed that they only found an association with girls and leukemia. I had a son with leukemia,” remembered Melanie Anderson. Bruce Anderson, who had devoted hundreds of hours to the families’ cause, was deeply disappointed at what he regarded as an inadequate investigation. “I thought they should have been able to bring out a lot more information with all of the millions of dollars they spent on it,” he said years later.

Linda Gillick said little during Fagliano’s briefing, but afterward she angrily unloaded on him. During the twelve years she had been an all-out activist, she and her son, Michael, had always expressed absolute certitude that contaminated water—and maybe air, too—had caused Michael’s neuroblastoma. Whenever cynics would point out that residential cluster studies almost always failed to identify a cause, she would respond that the evidence in Toms River—evidence she had helped to assemble on her pushpin map—was so overwhelming that Fagliano could not possibly miss it. But now his work was over, and Fagliano was telling her that he could not confidently identify an environmental cause for the type of cancer she cared the most about, Michael’s kind, which was classified as a central nervous system cancer. “I remember Linda Gillick being quite upset with me personally that night, saying we didn’t look hard enough and asking where we went wrong. She was very upset,” Fagliano recalled. “That was the hardest thing for me. So much of what was motivating the families was to find answers. We did everything we could, but some families came away from that meeting terribly disappointed and there was nothing we could do about it.”

The next day, in the same building, Fagliano publicly announced the study results and answered questions at a press conference. About twenty reporters were present—a good crowd but nothing like the hordes of journalists who had descended on Toms River back in 1996 when the existence of the cluster was first disclosed by the
Star-Ledger
. Frank Lautenberg, who had championed the families’ cause until he retired from the U.S. Senate in 2000 (he would be elected again in 2002), sat alone in a folding chair in the hallway, waiting for someone
to recognize him. Linda Gillick was there, too. For the reporters, she had toned down her furious reaction of the night before. Now, she was saying she was “disappointed but not dissatisfied” with the results.

As soon as Fagliano finished his briefing, many of the reporters moved out into the corridor, where a lanky, gesticulating man with salt-and-pepper hair was holding court. It was Jan Schlichtmann, and he was telling anyone who would listen that the Toms River study was “an earthquake” that would “impact public health and environmental policy-making for a very, very long time.” For Schlichtmann, it had been a disheartening weekend. The settlement of the legal case, announced just five days earlier, had not gotten the national media attention he thought it deserved. He had wanted a much splashier version of the vague statement the lawyers had negotiated. Now Schlichtmann was trying to make up for it by buttonholing as many reporters as he could and giving them his ebullient message. Together, the legal settlement and the study were going to set a new standard for resolving environmental controversies in communities across the country, he insisted. The reporters dutifully recorded his enthusiastic sound bites, but the stories they wrote and broadcast did not get much attention outside of New Jersey and Philadelphia. In the wake of the September 11 attacks, the country was now consumed with terrorism and war;
A Civil Action
felt like a long time ago. In fact, some of the key players in the Toms River drama, including Floyd Genicola and Elin Gursky (who was now in Washington, D.C.), were now working full-time on coping with anthrax and other bioterrorism threats.

There was a community forum later that day, and the health department had made elaborate plans for it—even arranging for a simultaneous broadcast on a local cable channel. The meeting site, at Toms River High School East, was just a few thousand feet from the corner of Bay and Vaughn avenues, where cracked asphalt and a chemical stench had heralded the first stirrings of environmental consciousness in Toms River way back in 1984. This time, though, only about seventy seats were filled in the huge auditorium, and the audience was subdued—a faint echo of the more than one thousand screaming locals who had mobbed similar meetings in 1988 and 1996.
Linda and Michael Gillick had played critical roles at those earlier meetings, contributing black-ribboned roses, impassioned speeches, and a hushed recitation of the names of sick or dead children. Now they were again in the audience, and this time Linda Gillick’s speech had a contemplative tone that matched the much sparser crowd.

She addressed the parents who, like her, were disappointed that the investigation had failed to identify a likely cause for their child’s cancer. “Stand proud,” she told them. “We know what has happened here. Don’t let the ball drop.”
¹²
The findings were less definitive than she had hoped, but they were still groundbreaking. Moreover, Toms River’s water and air were unquestionably safer now. The chemical plant had shut down, the Parkway wells had been filtered at last and the water in Toms River had been tested more thoroughly than anywhere else in New Jersey—maybe anywhere else in the world. The pathways of pollution that for decades had conveyed industrial chemicals into the bodies of town residents were blocked at last. As a result, Gillick predicted, the number of cancer cases would surely decline. In fact, she thought the decline was already under way, though Jerry Fagliano—ever the scientific killjoy—told her it was too soon to know.

Gillick finished with a vow: The Citizen Action Committee on the Childhood Cancer Cluster, the committee she had created and chaired for almost five years, would not be going away, and neither would she. The families had forged an unbreakable association, and there was still work to be done. Someone would need to monitor the cleanup at the chemical plant and keep a close eye on the water company. Someone would need to pressure the state health department to keep its cancer registry up to date and continue monitoring local childhood cancer rates. Besides, the investigation of the Toms River cluster was not quite over, even if its chief component, the epidemiological study, was now finished. Someday, there would be results from Barry Finette’s genetic tests, and from the federal government’s SAN trimer rat study, too.

Almost everyone in Toms River was finished with cancer clusters now. The town that had tried to move on so many times before did not have to try anymore. It was really over. “The feeling was that the state
did everything it could have done to study this,” remembered Gary Lotano, the local real estate developer who headed the chamber of commerce and the hospital board. “At some point, it had to end, and it did. The stigma had to end.” But for the Gillicks, Andersons, Pascarellas, and other families, it had not ended. It could never end.